How one team uses swimrun to combat MS stereotypes
Patric Tengblad and Fredrik Piehl
For the past five years, Patric Tengblad and his wife Åsa have been merrily swimrunning together. Patric was recently diagnosed with Multiple Sclerosis and for the 2019 season he’s pairing up newcomer Dr Fredrik Piehl. Together as Team Combat MS they will collect research and shed a positive light on this neurological disease that affects 2.3 million people worldwide.
SLM: Frederik, you work as professor of neurology and are a clinical neurologist. How does Multiple Sclerosis (MS) affect the mind and body, and can people successfully maintain an active sports life?
Dr Fredrik Piehl: MS is the most common non-traumatic neurological disability among young-midlife adults after accidents and until very recently, the nerve damage caused by inflammation meant MS sufferers were severely limited in what they could do in their daily life. The disease targets the central nervous system and this interrupts the information flow in a person’s brain, including signals sent from the brain to the body. Symptoms can consist of fatigue, numbness or tingling, weakness, difficulty walking, pain and vision problems.
Today, there are more effective treatments that limit risks but, unfortunately, many patients in Europe and the US don’t have access to these more effective drug treatments due to high costs or because they are perceived as more dangerous. Sweden is unique in this context, since many patients are offered treatment with a drug used for rheumatoid arthritis, which is very effective, relatively safe (it has been used for almost 20 years) and much cheaper. The bigger issue is that it’s an off-patent drug and not approved for MS because there’s no commercial interest.
SLM: Patrick, what’s the message about MS that you want to get out there?
Patric Tengblad: People have an outdated view of MS and I want to show that you can still feel great and train, as well as compete, with such a serious diagnosis. We aren’t all this fortunate but, at age 47, I am convinced that training helps both my body and mind recover.
According to the MRIs, I have had my MS during several years, including the years I’ve been swimrunning. My diagnosis was confirmed about a year ago, which makes me “new” to MS. My guess is that I’ve been living with the disease a lot longer but because I’ve always been training and active it might have helped keep the disease from escalating.
Fredrik is my MS doctor and I had heard rumours that he is a great long distance runner who also swims. This got me thinking that racing together might be a great idea and I asked him if he is up for a new challenge such as swimrun.
Now that I’m taking medication regularly my body feels very good again and I can train fully. Fredrik has advised me to cut down a bit, maybe reduce the number of competitions per year. Last year I competed in 9 swimruns, ranging from 11k to 75k, from May and September. This year, I will listen to him and hopefully won’t drain my immune system as much.
SLM: What are the psychological struggles of MS?
PT: Today I have both feet firmly planted on the ground and I no longer feel any psychological obstacles. To be honest, I feel quite comfortable. But it was way harder in the beginning when I was first diagnosed and was started telling friends. I got a range of different responses like, “My friend’s mom died after 3 months and before that she was confined to her bed” or “It can take up to 5 years before you’ll be in a wheelchair”. This made it so much more difficult although it also made me want to fully understand the disease. I opted not to Google MS but go directly to my doctor.
SLM: How are you collecting research on MS through swimrun?
FP: I think Patric´s dedication can be an example for many people with MS. Okay, not many people can do ÖTILLÖ, but they can challenge themselves to climb smaller mountains.
Our swimrun challenge is actually rather timely as we are running a large clinical study called CombatMS, where the goal is to get better knowledge on the best way to treat MS. What’s unique about this study is that it was designed together with patients in Sweden and the US. It’s funded by the American non-governmental institute PCORI– the Patient-Centered Outcomes Research Institute – who require a high degree of patient engagement in all studies they fund, as to encourage a combined effort by researchers and patients to address clinical problems that are important for patients (and not just for researchers or drug pharma). What could exemplify this better than joining ÖTILLÖ with a team called Combat MS?
SLM: You both live in Stockholm. What are your swimrun challenges for this year leading up to ÖTILLÖ on September 2nd?
FP: Utö and Stockholm swimruns for sure, we are talking about another World Series race before the big one in September. This will be a tough challenge, but Patric’s courage and bringing in me to the race start this year means that failure is not an option.
PT: I have two children, ages 4 and 10. And the older one competes in the Ångaloppet swimrun. My wife Åsa (pictured above) will be on the start line for ÖTILLÖ in September in the Women’s category. May the best team win!
ÖTILLÖ’s swimrun season opener in Hvar, Croatia is around the corner. Read more about the Experience (6.3k), Sprint (11.8k) and World Series (40.425k) races on April 6th & 7th here.
Article first published March 2019.